Wednesday, March 21, 2012

Party Of Five

Today is the first Pax and I are alone.  You know, the "dynamic duo".

There is something incredibly deep and special about a mother and her son, but a mother and her sick son...oh' it is more powerful than you can imagine.  Today was a day of many, small, but celebrated milestones here in CVICU.  You can't really do big again after rocking out open heart surgery like you owned the joint.  So now the two of us who both feel so very, very far from home, who's hearts ache with the need to be reunited with the other halves of our whole, we cling to each other until we are back with the others.   Our party of five is down two crew members and we all feel it.

I walked to the cafeteria this afternoon and really thought about this life. You know, hospital life.  I have lived it a lot over 2 1/2 years.  You walk outside after being inside for so long and it's like being reborn.  Something as simple as walking. outside. is kinda epic.  I have been outside once since I have been here.  I am desperate to get my feet in the sand and be drunk on ocean air.  I know my boy is too.  We want real life back, but the thing is, this is real life too.  Real, REAL life.  The part of life that stretches you and grows you in ways you didn't know you were capable of.  The part of life I thought "I got" until I was the one in it.  Is it weird to say that I am so f ing grateful for it?

Not only because I now have 3 of the most gorgeous, kind boys ever, but because without this journey I would just be.  With this journey, I am. I do.  I go. I reach. I stretch.
I take thousands of pictures just because I get it now.  It, being, this life and what we are supposed to do with it. So I eat up all the moments.  Not just the easy ones, but the hard and the in between too.  The gift of this journey has allowed me to find the smallest things, like "brotha" bathing my boy for the first time since surgery the most wonderful "job" in the world.  Or reading to my boys at night worth photographing. Or making friends with people who work tirelessly to care for my boy, because those people, they are moments too.  And I am pretty sure in the end, our journey teaches them moments just the same.

My friend joked about me and my "glass always full"in a text once. I replied oh' trust me I have my days, my moments, my weeks.  Even here in this hospital surrounded by life, death and the in between, I have my moments.   So while my glass surely isn't always full, I am just as human and bit*%y as the next person, I do wear my "special needs glasses" full time and with those glasses comes the comprehensibility that we can choose how we spend our lives.  Looking back and questioning up or looking forward and trusting up.  I choose the latter, even in the scariest, saddest and maddest of times I don't ask why.  I have three amazing little boys, one with special needs, but amazing just the same. Paxton in the grand scheme of things has stomped all over HLHS and said I don't think so. We are truly lucky.

So, we have to be apart and it hurts, like really really hurts, but it makes home so much sweeter.  You know that silly old saying you never know what you have... well we have a party of 3 waiting on us to bust out of here and you can bet, oh yes you can bet, we will take this journey, all its pain, its fear, its hardships and tuck them away for that random silly day when something completely unimportant sends us into a tissy. It is then we will remember that it ain't so bad after all.  Choose people! Choose how you will wake up tomorrow because I sit here on the 5th floor of a Children's Hospital and I just know life is a blazin' out there and people aren't slowing down enough to read to their kids, to take that silly photograph, to talk to the person that is beside you or to shut down and go fishing with your kids. 

Choose because you can, because it is a gift some aren't given. I choose while I sit here, sometimes in tears, sometimes otherwise to know that we will come out of this stronger and wiser. When I want nothing more than for Pax to fall asleep so that I too can close my eyes for a not long enough moment, I know deep down, this too shall pass and he will fall asleep and he will look at me with those eyes and all will be right with the world. Even in here. You know why...because we aren't the ones down the hall saying good bye.  Every day that I don't ever have to do that is a day to let the tears shed if need be, but to celebrate all of these very blessed moments. Join me won't you...


Medical Update For My Heart Mamas:

Paxton is 5 days post Fontan operation.  His heart rate is still adjusting to his new circulation so while a bit high around 120's when awake he is resting at 95 or so.  His sats are....wait for it....90-93!  He isn't cyanotic around his mouth anymore. His feet and nail beds are pink.  I want to bust out my canon and zoom in on those piggys to prove it, but all I have is my phone for now. He remains on iv fluids, etecrin, potassium (due to diuretics) and toridol prn.  He is having some lung issues.  His right lung is full of fluid, today no worse no better, and after a sedated contrast CT scan we know that he has collaterals that need to be coiled off to stop this from happening.  He did have a heart cath done 2 1/2 weeks prior to surgery that showed no collaterals, or none big enough for coiling, I am told, it is very common post Fontan for the collats to become exacerbated due to the complete rewiring of his system.  We are currently trying to dry him up with lots diuretics.  Holy pee batman!  He had the mediastinal chest tube pulled yesterday and his two piggytails remain.  His pacing wires are still in place and so is his RA (right atrial) line.  We will be going to for cath Thursday or Friday as of this morning.  We will continue to x-ray daily until then.  Once we get this fluid under control hopefully we can start looking toward the H word ; ) Today he sat in his big boy chair, walked further than he has thus far but only with me in front of him as bait otherwise he plops his butt right on the floor and says "  I wanna hold you" meaning pick me the frig up.  He also got his first sponge bath, courtesy of Mommy, since surgery today.  Kid was RIPE I tell you!  So we have a little setback on our plate, but in the grand scheme of his whole entire bada%* HLHS history, this bump in the road is kind of like our hazing. We have had it to good this far not to pay our dues now. It's all in how you look at it.... Thank you to all of the heart moms who contact me via email.  I try to update with medical mom version jargon so that when it is your turn you have a moms beside view to go off of.  Heart hugs from Pax and I!


Me said...

Great post! Great words of advice about life and how to live and embrace it. :)

Zeba said...

He is the most precious little kid. You lucky mom. And I hope and pray that both of you get to get drunk on ocean air soon. :-)

Janine said...

Beautiful post. Thank you for sharing.
Still praying for your warrior and all who love him.

Amy Young said...

As always a stellar performance in your recap of what is going on! I am so proud of Pax, and of you! You are right about taking the pictures and soaking up the moments. I wish I had done more of that. God speed my friend and we hope to be hearing the "h" word from you soon. We all know you can't say the entire word because the if you say it out loud the powers that be always screw it up! It is a weird thing, but it exists! :)

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